Patient Stories

Meet Charlie

Charlie experienced dizzy spells, breathlessness, fainting, exercise intolerance, and severe infections from childhood, but her symptoms were repeatedly attributed to stress, asthma, poor diet, or psychological causes. Eighteen years after her first hospitalization, she was finally correctly diagnosed and treated.

Meet Mia

Mia began experiencing heart symptoms at just 3 years old, but her concerns were dismissed until her father’s diagnosis led to testing that revealed her own HCM. After childhood open-heart surgery, ICD shocks, worsening heart failure, and being listed for a heart transplant at 17, Mia shares her story to raise awareness about invisible illness and the support young patients deserve.

Meet Caroline

After years of breathing difficulties, dizziness, fatigue, and other symptoms attributed to asthma, whiplash, pregnancy, and stress, Caroline was diagnosed with severe apical hypertrophic cardiomyopathy. Now, as a patient advocate and theater creator, she works to ensure that patients are heard and no one faces cardiomyopathy alone.

Meet Faydra

Faydra was told that her difficulty keeping up in gym class was due to being out of shape—until she suffered cardiac arrest at 13 and was diagnosed with hypertrophic cardiomyopathy. After later experiencing heart failure during pregnancy and AFib, she now shares her story to encourage others to listen to their bodies and advocate for proper care.

Meet Kayla

At 26, Kayla’s symptoms during her second pregnancy were dismissed as normal pregnancy discomfort. Within 10 days of giving birth, she developed severe breathing difficulties, chest pain, and dizziness and was diagnosed with full-blown congestive heart failure caused by peripartum cardiomyopathy. She now advocates for earlier recognition and treatment of pregnancy-related heart disease.

Meet Abagail

At 28, Abigail’s shortness of breath, exhaustion, abdominal symptoms, and weight gain were initially attributed to gas, asthma, SIBO, and fatty liver. She was ultimately diagnosed with severe heart failure, a 9% ejection fraction, and two pulmonary embolisms. After receiving a CRT-D and completing cardiac rehabilitation, Abigail now encourages women to trust their bodies and advocate for answers.

Meet Debora

After living for two decades with an MVP diagnosis, Debora continued experiencing severe heart symptoms, medication complications, and out-of-control blood pressure. A cardiologist eventually identified an electrical heart problem and recommended a pacemaker, which changed her life and inspired her to advocate for patients who feel unheard.

Meet Suzette

After being misdiagnosed with “just a virus” three times, Suzette Marais Nel experienced a terrifying collapse in which her heart flatlined. Her story highlights the importance of listening to patients, recognizing serious symptoms, and understanding the lifesaving value of CPR.

Meet Cindy

At 14, Cindy’s shortness of breath during sports was diagnosed as exercise-induced asthma. Years later, she was diagnosed with obstructive hypertrophic cardiomyopathy after developing pre-syncope, lightheadedness, palpitations, and severe exercise intolerance. Following S-ICD surgery, septal myectomy, and valve repair, Cindy is feeling better and can keep up with her son.

Meet Nate

Nate was misdiagnosed with Crohn’s disease for 12 years and underwent 16 surgeries before genetic testing revealed HLH, a rare immune disorder caused by an XIAP mutation. Now, after a life-saving bone marrow transplant, he advocates for earlier diagnosis, genetic testing, and greater equity in healthcare.

Meet Audrey

At 26, Audrey’s heart palpitations, breathlessness, and worsening fatigue were repeatedly dismissed as anxiety. After developing endocarditis, her mitral valve tore completely, leaving her in heart failure and requiring ECMO, emergency valve replacement surgery, bypass surgery, and an ablation. She now encourages others to trust their bodies and advocate for themselves.

Meet Marg

Marggie lived with severe joint pain, fatigue, migraines, fainting, and other unexplained symptoms for decades before receiving diagnoses of Ehlers-Danlos Syndrome and POTS. As an ER nurse, artist, and lifelong patient, she now shares her story to advocate for listening to patients and connecting the puzzle pieces.

Meet Marian

At 23, Marian’s palpitations, tachycardia, and fatigue were dismissed as anxiety, despite being caused by arrhythmias she was born with. In 2024, after experiencing a heart attack at an air show, a cardiologist confirmed she had suffered a silent septal MI. Marian now shares her story to raise awareness of heart attack symptoms in women and encourage others to advocate for their health.

Met Kristen

Kristen Olinger spent 37 years experiencing fainting, dehydration, and other unexplained health problems that were repeatedly dismissed with advice to drink more water because she “looked fine.” After her husband advocated for further testing, Kristen finally found answers and now encourages others to trust their bodies and keep searching for a care team that will listen.

Meet Stephanie

After decades of tachycardia, syncope, breathlessness, and difficulty managing stairs, Stephanie’s symptoms were repeatedly attributed to stress, indigestion, and being out of shape. She was finally diagnosed with HCM after two of her daughters received diagnoses, inspiring her to advocate for family-history screening, patient voices, and the prevention of sudden cardiac death.